Managing palliation in the neonatal unit

Uthaya, Sabita; Mancini, Alex; Beardsley, Christina; Wood, Daniel; Ranmal, Rita; Modi, Neena

doi:10.1136/archdischild-2013-305845

Cited by 23 publications

(30 citation statements)

References 2 publications

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“…Such care includes planning with the family about the practicalities of the death and continuing family support after the baby dies [6, 7]. The timing of withdrawal must allow time for parents to prepare for the death of the baby but be balanced against the suffering of the baby [8].…”

Section: Introductionmentioning

confidence: 99%

Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

Kilcullen

Ireland

2017

BMC Palliat Care

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BackgroundNeonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.MethodsThe study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unit in Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematic analysis of the data was conducted within a phenomenological framework.ResultsSix themes emerged regarding family support and staff factors that were perceived to support the provision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, and beliefs. Family support factors included emotional support, communication, and practices within the unit. Five themes emerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education, lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative care provision. The regional location of the unit also presented unique facilitators and barriers to care.ConclusionsThis study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

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Section: Introductionmentioning

confidence: 99%

Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

Kilcullen

Ireland

2017

BMC Palliat Care

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“…While there remains variability in practice around administering medications for EOL symptoms in neonates, many providers give some type of medication. Typical classes of medications utilized are opioids, benzodiazepines, antipyretics, anticholinergics, diuretics, hypnotics, and anticonvulsants (9,42,64). The majority of studies in neonates are limited to intravenous administration in a hospital setting.…”

Section: Pharmacological Managementmentioning

confidence: 99%

“…In these conditions, older, verbal populations commonly experience a high symptom burden from the same sources of suffering and their self-report and observations scores correspond to the severity of their burden. Providers suggest that neonates experience the same symptom burden and ought to be treat similarly ( 17 , 42 ). For example, in verbal pediatric patients there is a high likelihood of dyspnea occurring after ventilator withdrawal, and there is also a high likelihood of dyspnea causing additional secondary symptoms that can be alleviated with pain medications ( 43 ).…”

Section: Assessment Of Symptomsmentioning

confidence: 99%

“…Care should be taken to reduce uncomfortable procedures or invasive touching/stimulation ( 58 ). When symptoms occur, interventions such as decreasing stimulation, massage, skin care, mouth care, elevating the head or repositioning for dyspnea, fluid restriction, and gentle suctioning may be beneficial ( 9 , 42 , 49 ). Gentle suction and repositioning, for example, are more effective than pharmacological therapy the majority of the time for secretion management and noisy breathing.…”

Section: Management Of End-of-life Symptomsmentioning

confidence: 99%

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Neonatal End-of-Life Symptom Management

Cortezzo

Meyer

2020

Front. Pediatr.

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Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering. Parents hope their child will have a peaceful death and will not feel pain. A significant component of end-of-life care is high quality symptom evaluation and management. It is important that neonatal providers are knowledgeable in symptom management to address common sources of suffering and distress for babies and their families at the end-of-life (EOL). Recent findings: Medically complex neonates with life-threatening conditions are a unique patient population and there is little research on end-of-life symptom assessment and management. While there are tools available to assess symptoms for adolescents and adults, there is not a recognized set of tools for the neonatal population. Nonetheless, it is widely accepted that neonates experience significant symptoms at end-of-life. Most commonly acknowledged manifestations are pain, dyspnea, agitation, and secretions. In the absence of data and established guidelines, there is variability in their clinical management. This contributes to provider discomfort and inadequate symptom control. Summary: End-of-life symptom assessment and management is an important component of neonatal end-of-life care. While there remains a paucity of studies and data, it is prudent that providers adequately manage symptoms. Likewise, it is important that providers are educated so that they can effectively guide families through the dying process by discussing disease progression, physical changes, and providing empathetic support. In this review, the authors make recommendations for non-pharmacological and pharmacological management of end-of-life symptoms in neonates.

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“…IC withdrawal has become more common since 1988 . Guidelines available since 1994 in the USA and since 2004 in the United Kingdom made only brief reference to the phenomenon of prolonged survival after IC withdrawal . Parents and clinicians usually expect death to follow relatively quickly after withdrawal of intensive support .…”

Section: Introductionmentioning

confidence: 99%

Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care

et al. 2015

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Unexpected long-term survival after neonatal intensive care withdrawal occurs occasionally but unpredictably. Significant neurodevelopmental adversity was invariable in those surviving beyond infancy. Ventilator dependency along with severely abnormal electroencephalography and neuroimaging is still compatible with long-term survival. The possibility of protracted survival should be discussed routinely with parents before intensive care withdrawal.

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Managing palliation in the neonatal unit

Cited by 23 publications

References 2 publications

Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

Neonatal End-of-Life Symptom Management

Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care

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